Thursday, August 20, 2009

Does your Keto Kid sleep in your bed? In the beginning of Noah's epilepsy, he slept in his crib. Until, around 2 am one morning, I heard a seizure. I don't know how I heard it, it was silent. But, I woke up suddenly, walked into his room and he was seizing face down into his sheet. I was never the same again.

I believe the parent of an epileptic child sleeps in a lighter phase. We have to. We have to hear our child throughout the night.

Noah has been doing incredibly well on the diet. If we make it until September 5th with no more seizures, we will have had only 2 seizures in the last year. For us - a miracle. From 150 down to 2. The tricky part of our situation is that his seizures seem to be during that delicate time of sleep for all epileptics - just after dozing off or just before waking.

As a result, he is back in our bed. We put him to sleep in his bunk bed with his brothers. (Baby monitor on). As soon as my husband and I go to bed, we bring him in with us. I've struggled with the whole situation because I want him to experience normalcy as much as possible. I want him to have that fun time with his brothers - chatting after the lights are out. They open up to each other, chat, laugh and fall asleep. But, I don't feel like my other boys should have the responsibility to hear/feel a seizure while they are sleeping. I don't want their bodies to adapt as mine has to a lighter sleep that detects seizures.

Our solution was to bring him in to our bed again. I let you know how it goes. At least he is incredibly snuggly! Could do without the teeth grinding though!

3 comments:

Fawn said...

I hear ya, Cathy. Jade doesn't sleep with us these days. She gets tonic seizures at night, but they're over as soon as they've started. The bad thing is that we don't know what we're missing, so it's hard to know if we need to make further adjustments to the diet. Also, she LOVES to sleep with us. But with a baby who is already frequently in bed with us at least part of the night, it's just too much to not have her in her own bed.

Wow, I love the new look around here!

Marie said...

Our daughter has had many seizures while waking up. After the second or third, we stopped trying to have her sleep alone. She now sleeps with one parent or the other just so she can be watched (listened to or felt also!) We are contemplating putting her back into her own room and bed but we just are not ready to make the break. The what=if's are still too real.

Tam said...

We have a toddler bed in our room. Luke's room is technically in with his brother Jude (his clothes and toys are in there).

We often bring him in our bed in the morning because that's when he has the most seizures and we want to keep track of clusters.

There is a distinct sound when a seizure comes. The intake of breath changes. Both my husband and I are cued into that and more than once someone has had a similar intake during a dream and both my husband and myself have woken up.

 

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